Did you know that the symptoms of Bile Acid Disorder (BAD), which are easily treatable, are exactly the same as those for IBS-D?

I didn’t know about this until 3 months ago when my GP, who’d been doing her homework, asked if I’d like to try a treatment called colestyramine to see whether I would benefit from it. Well, much to my amazement, I did and have now been able to return to an absolutely normal diet with no pain, diarrhoea, gas, bloating or nausea whatsoever. A 100% solution for my problems.

There’s a test (SeHCAT) that can be done for BAD but my GP decided not to make me wait and gave me a trial-by-treatment instead.

Only about 20% of gastroenterologists know about BAD and even fewer GPs, so it’s not surprising that 50% of patients get a misdiagnosis of IBS.

Do ask your healthcare professionals about BAD and colestyramine. If 50% of you with D could get a solution as I have, perhaps more patients would be offered the SeHCAT test or a trial-by-treatment of colestyramine before a wrong diagnosis is given.

Roz

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  • Hello Rozb, Im so happy for you that you found something that relieves your anguish that you had to go through :). Sorry to be so graphic but I need to no what do they class as IBS D I no it sounds like a stupid question but I was first diasgnosed with IBS C then it was IBS D now its IBS A and I have tried most things with no joy. With your IBS D did you go and go in the morning and felt bunged up for the rest of the day? or was you going throughout the day and evening reason im asking is I have found your posts very interesting but would like to no if you suffered like me before I go to my GP. Would be very grateful if you don't mind sharing :) Thanks

  • Hi texty89,

    Yes, I did 'go' a lot in the mornings, but still frequently felt as if my bowel wasn't comlpetely empty - so much so in fact that when I felt really uncomfortable, I'd use a glycerine supository to clear out whatever was left. There were times when I used to have bms throughout the whole day, but these were infrequent. I also had lots of wind - often trapped which caused a lot of pain.

    If you have mostly D problems, the colestyramine has to be worth a shot. It's not dangerous as it stays within the boundaries of the digestive system rather than invading the whole body. Also it's in powder form which you make into a drink so you can easily control the amount you take to suit you personally. My dose is a quarter sachet before lunch and a half sachet before my evening meal, however, some people get by on less than this whilst others take up to 4 sachets a day.

    It's a real pleasure to share this info as it could help so many people.

    Roz

  • Interesting. I didn't know about this and often wondered why sometimes my "poo" was an orange colour and burnt. It went through my mind,that why was bile getting into my system.

  • Hi Raas21,

    You could well be right about the burning being caused by too much bile acid. I actually never had that problem, but have read that it can be one of the symptoms of BAD.

    Do give colestyramine a go, it's a pretty instant fix once you get the dose right.

    Roz

  • Thanks.

  • Hi Roz thank you so much for replying I will be visiting my doctors this week I get them symptoms every god damn day and yes i believe it would be worth a try anything that helps im willing to give a go :). How long does it take before you get a calmer stomach Thanks so much for your advice

  • Good news is it's pretty much an overnight result. I overdid it for the first couple of days and made myself bloated and constipated (I never do things by halves!), so had to spend another couple of days getting back to the D stage before starting again. So, do be advised and start off with a really low dose, e.g. a quarter sachet before lunch and again before dinner maybe and work it up from there if you need to. Some people bloat with it a bit at first, but that usually stops happening once you get used to taking it.

    Let me know how it goes for you, I really do hope it works.

    Roz

  • thanks so much for this info will defo let you no how i get on :)

  • Hi Roz, can I ask when you did FODMAPs did all or some of your symptoms go?

    What were your symptoms before BAD and FODMAP?

    When you say 'diarrhoea' do you mean full on watery? Or just the need to go more often?

    Did you ever have the fructose or lactose malabsorption tests? Hydrogen breath test? If so were they +/-?

    Sorry lots of queries as still trying to figure out why I get flare ups.

    Thanks

  • Hi Ibsr,

    About 80% of my symptoms went when I started on FODMAPs. I then discovered that there were several foods which were supposed to be okay but just weren't so for me. I had to eliminate not only wheat, barley and rye, but also rice and oats which came out just as they went in! I just stuck to products made with maize (corn). Fruit was a real problem and I had to give up on all of it except for strawberries and kiwi fruit. Some types of lettuce didn't go down well either. There were other odd bits and pieces approved by both Monash and the NHS that didn't like me at all.

    Pre-FODMAPs, I could have full-on watery diarrhoea, near to normal, or a mix of both in the same bm. I would go between 3 and 8 times a day and each time the stool could be different, I never knew what to expect. One of the worst things was that horrible sensation of having (as somebody put it the other day) 'a lump in the butt' due to inability to clear my bowel properly.

    The only breath test I had was for SIBO which came back negative.

    I did do a candida test before I found FODMAPs which was positive and, after following the diet for that, was relieved of about 30% of my original symptoms. I don't know whether FODMAPs would have been so successful for me if I hadn't done that first.

    I hope this helps and I don't mind how many questions I answer or how often.

    Roz

  • Thanks Roz, hugely helpful. How about pain? What type and location if you did?

  • I had pain all over the place and it could be anywhere from my upper chest to lower abdomen - sometimes everywhere at once! When it was just a lower ab pain, it usually felt like trapped wind and almost always occurred when I felt as if I hadn't fully emptied my bowels. It was the most common type of pain I had. Sometimes I could get rid of the wind and others not. I frequently used glycerol suppositories to finish emptying out. I also used to get a wicked little griping pain down the lefthand side of my lower ab which my GP said was where the colon descends.

    I also had a lot of indigestion and was prescribed Omeprazole at one point which didn't help at all.

    I found that all probiotics (my kitchen shelves are testament to the huge number of brands I tried) caused me abdominal pain - some more than others.

    Roz

  • Thanks Roz. Interesting about the probios. I am ok with those.

  • Yes, it is a bit strange, although someone was on here only a few weeks ago saying the same thing. I can only think that I'm just not short on probiotics and the overload gets rejected.

  • Hi Roz I have a gull stone the size of a golf ball, if this is stopping my bile getting through could i have the same problem or symptoms.

    Nice to hear somebody having some success

    ps i do know your not a doctor

  • You're right, I'm not a doctor and I don't know much about gallstones as they're not something that's ever affected me. It might be a good idea to ask Dr Nick Read on the IBS Network about this as he's a gastroenterologist and knows all about colestyramine and BAD.

  • Thank you Roz, i will do that

  • Hi please could you let me know where you had your test for candida? All my symptoms seem to point to it but my gp is not interested so not sure where to turn now! Many thanks

  • You have to pay for this test yourself as it's not recognised by the NHS (as so many things which might be helpful aren't). I went to: candidatest.co.uk and can highly recommend them. Along with your results, you get explanatory notes and the opportunity to communicate directly with the microbiologist who did your test if you've still got questions. If you get a positive result, I can give you the dietary info to clear it; it's a bit of a flog - took around 4 months - but was well worth the trouble.

    Roz

  • Hi I went to my dr and asked about this she said she had never heard of it and would look into it which she did she said they don't do the seHCAT test in my area but she wanted me to go for a liver scan and take stool sample to be tested anyone else had this done then depending on result would let me try questran

  • Hi Suzannes,

    My doctor had only just found out about BAD when she set me off on colestyramine, I was, in fact, her guinea pig. Very few medics know about this condition although they all ought to as it would mean a better life for a lot of people.

    As your local hospital doesn't do SeHCAT testing, you have the right to ask to be referred out of area to one which does. It's a very specialised test which you can read about for yourself if you Google it. I don't think either a liver scan or a stool test will prove whether or not you have BAD, hence SeHCAT.

    A trial-by-treatment, with no test, works just as well, i.e. if your symptoms improve/vanish altogether, you've got BAD, if they don't, then you haven't - simple as that.

    As colestyramine doesn't invade your whole body, but just sits in the digestive system mopping up the excess bile acid, the only side-effect you might get if your problem is not BAD (or if you take more than you actually need) is a bit of brief constipation.

    Look up Prof. Julian Walters on the web and you can read about the work he's doing in this area. Dr Nick Read on the IBS Network also knows all about BAD and will answer any questions you might have if you send him a message.

    Roz

  • Thank you for your reply I am going to push for this treatment I don't think a liver scan is going to show anything either as how can it show bile production and I have had stool samples done in the past to no avail

  • Good for you, keep us posted as to how you get on.

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